Up at 5AM: The 5AM Solutions Blog

Whether you call it a personal health record (PHR) or a personally-controlled health record (PcHR), the notion of a person-centered, self-managed electronic medical record is seen as both an essential byproduct/outcome of health IT and its core value. I certainly yearn for the day where I am at the center of my electronic health record, flowing my health information through and among my physicians, so that my entire health care team has a clear and complete view of my health. But away from people like me in the “health IT” field, apart from the DC echo chamber, do people care about managing their health, digitally? ...Or at all? Are PHRs on the 2012 “in” or “out” list?

As engineers, scientists, consultants, etc. we are frequently presented with complex problems in our daily lives. In fact, this is sometimes the only purpose of our work lives--to solve these problems for ourselves (and others) and probably more often than not we will sit down and think about the solution ourselves or perhaps discuss the problem with colleagues to bat around ideas for a solution. Perhaps when we get the problem refined to a particularly low level and we still don’t have a clear answer we might try researching, even asking around on the internet to find other people who might have encountered the same problem (all too often encountering this problem). But how often do we just go out to listen and learn from people in similar domains to discover things we may not encounter in our day to day life, but might translate to help solve problems we might face down the road?

Admittedly, I am a bit behind in my journals, so I only recently read articles in Nature entitled Secrets of the Human Genome Disclosed and Genomes on Prescription. The first article was about geneticist Ghoulson Lyon, who presented a research study at a conference on a family suffering from an unknown, apparently genetic, disease. He was trying to find genetic variants associated with the disease, which caused some male children in the family to die before they reached their first birthday.

I have been designing assays for some time now. Starting with a few oligos in graduate school, I kicked up my PCR primer design experience out of school when I went to work for a genome center. Then there was my first blunder--ordering a few hundred dollars worth of primers with the reverse primers in the wrong orientation. I broke the news to my boss, resignation letter in hand (it hadn’t occurred to me that we probably spent more than that in one week just on pizza). Later in my career, the stress level went up a few orders of magnitude when I had to design tens of thousands of probes for SNP genotyping panels. That’s when I developed my addiction to TUMS^® and came to the realization that my reward for a job well done was invisibility. With assay design, people only look for you when something’s wrong.

Recently, I had the pleasure of being able to work with implementing a piece of our UI in a new and fundamentally different way than in previous approaches, and I thought it would be an interesting and informative lesson to share, especially for folks looking to do the same. As I continue here on this blog with a summary, please note that the full content/example with more detailed information can be found here on my personal blog.